Whether by choice or weight of numbers, more of us will die at home in future. And with pressure to ease assisted dying restrictions, the gaps in community-based care need fixing – before time runs out.
Emily has been given six months to live and is trying to spend as much time as possible with her two children, who are naturally devastated their mother is dying.
In the recent school holidays, the 42-year-old took her daughter, 14, and son, 11, to Kāpiti Island for the day. Another goal is to go to Tekapo to see the night sky.
But most of the time Emily ‒ a single parent ‒ is forced to deal with the bone-aching fatigue of metastasised breast cancer and what she has to do, and cannot do, to get through her day. Twice a week, she taxis to a Wellington pharmacy to get her opioid painkillers and chemotherapy pill – she isn’t allowed to drive. Often, the script is not correctly filled out due to errors at the pharmacy or by her GP. On a recent trip, Emily “turned on the waterworks’'.
“I told them: ‘I’ve got a terminal illness so I’ve got limited life left. I do not want to stand in this pharmacy for 20 minutes, twice a week, looking at you. I don’t want to do that’.’’
The Te Omanga Hospice sits in manicured grounds down a long driveway in Lower Hutt. It’s a sanctuary for Emily (not her real name), who goes there once a week for everything from counselling and art therapy to social catch-ups. On a sunny morning in late April, she sits in one of the common rooms with her friend Heather, a 75-year-old who is also terminally ill with cancer, and they talk about what it is like to be dying in Aotearoa today.
Hospice New Zealand is about to undertake a review to highlight what it’s like to interact with society when you’ve been diagnosed with a terminal illness. Aiming for 1000 responses, it will ask patients and their carers about dealing with everything from banks and health providers to telco companies and schools in the final days, weeks and months of life. It wants to know how well the dying are treated in New Zealand and will use the “dying reviews” to encourage the country to reconsider what it means to enable “dying well”.
Hospice’s conversations precede the upcoming mandatory review of the End of Life Choice Act, which took effect in November 2021 after a 2020 referendum found nearly two-thirds support for an assisted death regime. At the end of January, 681 New Zealanders with a terminal illness had had a medically assisted death – about 1% of those who have died in that period.
Despite this very recent national conversation, our health system doesn’t have a pathway for the dying. We have a pathway for maternity care but not one for the other end of life – a care plan for a person who is terminally ill and their whānau. This is a conundrum for Dr Salina Iupati, a consultant in palliative medicine at Te Omanga Hospice.
Iupati asks: why do we allow people to take time off to prepare for and care for a baby when we don’t offer the same compassion to a family member caring for someone dying? Under employment law, whānau can’t take paid time off work, even though dying in the community will become increasingly common, she says. Iupati has worked in palliative medicine for a decade and talks of the coming surge in deaths over the next two decades – from 38,000 in 2023 to 55,000 in 2043 – as the population increases.
Care in the community
People are also living longer, raising questions for care. Iupati is working on a PhD in community specialist palliative care services and says the number of New Zealanders aged 85-plus will rise by 60% over the next decade. With a potential shortage of about 12,000 aged-care beds by 2032, this suggests more of us will be cared for in the community at the end of our lives.
Even now, the GP shortage and crisis in emergency departments mean dying patients often can’t even see a doctor, Iupati says. Palliative care – usually given to someone with less than 12 months to live – can be difficult to access, especially for those living remotely.
“People will increasingly be dying in the community but we are woefully under-resourced for this,” Iupati says. “Most of the care of our dying is done by [family members] but they don’t get any support or funding.’’
While death may be moving out of hospitals and on to the home front, Hospice New Zealand CEO Wayne Naylor says we’re not ready because we don’t know how to talk about dying, something he hopes the upcoming reviews might change.
Dying has become so medicalised that we’re losing the human touch. In Naylor’s view, it has become a medical event with a social component when it should become a social event with a medical component.
“When someone dies, it’s seen as a failure rather than a natural part of life and we do all we can to stop people dying,” he says. “To have a good death, you need the person who’s unwell and dying and their family to be cared for by their community, and the medical professions to step in when needed.”
The country has slipped behind on how it cares for its dying, says Naylor. According to the Economist Intelligence Unit’s Quality of Death Index, we ranked third in 2015, but in 2021, another international study, looking at expert assessments of the quality of death and dying, put us in 12th place.
Naylor says although the two studies took different approaches, other countries in the 2021 report stayed at the top of the list but NZ slipped significantly.
He also points to advanced-care plans – also known as living wills – which are growing in popularity. People with a terminal illness can specify the kind of medical care they want towards the end. For healthy New Zealanders, an advanced-care plan can alert family and medical staff to their wishes in the event of an accident or sudden health decline. But it is not legally binding: medical staff and other family members can overrule patients’ wishes.
A petition was presented to Parliament earlier this year calling for a national register of advance care plans and to ensure directives are followed.
Naylor is co-chair of a Te Whatu Ora- funded palliative care steering group set up last August, and hopes it can make recommendations to officials about ensuring everyone has access to the same holistic care. There are glaring gaps in treatment: someone dying on the South Island’s West Coast won’t get to see a palliative care doctor and there is no hospice in the region, says Naylor.
Te Whatu Ora’s Tim Wood, group manager of planned and unplanned care, says it set up a national palliative care work programme last year, which includes the steering group, and is aiming to make end-of-life care consistent throughout the country. The steering group, along with a national palliative care survey currently on its website, will help officials understand what services and care New Zealanders want at the end of their lives, Wood says.
The steering group will, among other things, identify and recommend palliative care services to be publicly funded and ways to develop a sustainable, diverse workforce that is “clinically and culturally competent”, including in the community. Much of its work is due for completion this year with consultation on the recommendations expected early next year.
Soothing others
Emily finds the waiting, and the limbo, is one of the hardest things about being terminally ill. “It’s this balance between living these last bits of your life and feeling like crap from these life-lengthening medications, or not living as long and feeling better. You’re in this decision mode all the time and friends and family don’t understand it because they just want you around.’’
She has cashed in her KiwiSaver to cover her mortgage. She gave up her job as a public servant when she was diagnosed 18 months ago and an oncologist gave her a life expectancy of six months.
Friends pick up her children and take them to sport, and Emily finds she spends quite a lot of time soothing others who can’t deal with her terminal diagnosis.
“I had a friend break down and start crying on me recently. It’s so hard. People don’t know what to say and so you end up comforting a lot of people.
“And I hate it that I am making my children miserable with this always hanging over them.”
Her hospice friend Heather is comfortable about dying but has swung from preparing for her own death to outliving her prognosis, “which means I’ve had to learn how to live again’'.
Emily and Heather would both qualify for an assisted death, and both support those who choose that option, but at this stage they wish to die naturally.
Hospice NZ is a conscientious objector on assisted dying – 32 of its 33 member hospices do not allow assisted deaths on their premises (just Tōtara Hospice, in South Auckland, provides a room). But the organisation still provides wrap-around care for the terminally ill who choose an assisted death.
The hospice philosophy is to neither prolong death nor hasten dying. But Naylor doesn’t want assisted death to become the best choice for someone who is dying because they don’t get the medical, emotional and mental support they need towards the end of their life.
Hospice NZ also wants to get the word out that for nine out of 10 people, dying is a relatively peaceful event. What can change this is when there’s too much medical intervention and someone is kept alive at all costs, says Naylor.
Iupati says terminal patients should be offered advanced-care discussions. Do they want this treatment which might extend their life – but at a cost?
She cites the example of attending a clinic with cardiologists at Hutt Hospital. They identified patients with end-stage hearts, who move in and out of hospital. Questions put to these patients include: do they want to be resuscitated or do they want palliative care?
“We need to start talking about these issues,” she says. “A lot of people come in and out of hospital and they don’t realise that they’re going to die from this. They go into hospital, get intervention, feel a bit better, but they never fully recover and then they’re back again. We need to identify those people and have those conversations before there is a crisis.”
Iupati wants more palliative care support in hospital so the dying aren’t given unnecessary intervention – something she hopes the palliative care steering group will review.
Act leader David Seymour and his deputy, Brooke van Velden, drove the end-of-life choice legislation. Seymour supports good palliative care and says countries with liberal euthanasia laws tend to put more funding into medical and holistic care for the dying. But he says palliative care does not prevent suffering in all cases. Some people have terminal conditions that no amount of care will ease.
When the legislation is reviewed in November, Seymour wants some tweaks. One is that the eligibility for assisted dying should not be restricted to those with only six months to live – a requirement from the Green Party that he describes as “cruel’'. The gag clause, which forbids a doctor from mentioning an assisted death as a choice to a terminally ill patient, is another area bill proponents like Seymour want removed.
A peaceful end
Judy Larkin is relieved she was approved last June for an assisted death. The 70-year-old Aucklander has lived a full life with Pete, her husband of 50 years, and treasures each day she has left with him.
But she has terminal, metastasised melanoma and has opted for an assisted death. She has seen family members suffer in their final days of life and doesn’t want the same for herself and her family.
Larkin got a shock diagnosis of uveal melanoma in 2020 which led to the removal of an eye and partial optic nerve. Over the following two years, scans showed the cancer had spread to her liver and kidneys. She was given six months to live.
Larkin – a mother of two adult children – was relieved that the end of life act had become law. “I wanted the same end as my cat, Sam, who was euthanised that year. I want to die like Sam, peacefully and legally, with my husband holding my hand.’’
She chose the day of her planned death as their wedding anniversary last December. But the day came and went, and she has defied the six-month prognosis thanks to good palliative management of her condition: medication, palliative care counselling and liver function tests.
It’s now 11 months since Larkin was approved for an assisted death and she will need to reapply next month when the 12-month anniversary comes up. She has no qualms as to whether this path is right for her. She doesn’t want to wait for the disease to take her naturally.
“I feel like this legislation has given me a lifeline so I can avoid unnecessary suffering and loss of independence, and I definitely don’t want my family to endure my suffering either.’’
Jessica Young, a senior research fellow at Victoria University’s School of Health, is leading several projects on assisted dying, including the first national study into the early experiences of the assisted dying service. Funded by the Cancer Society, Young spoke to 23 people who got approval for assisted dying before their deaths, and their whānau, and says most patients did not anticipate how difficult it would be to choose a date and time for the procedure.
Young says sometimes, patients’ motivation is to help families move on and not endure a long, bedside vigil as they watch a loved one suffer and wait for them to die.
Some people like knowing an assisted death is an option if the suffering gets too intense, but they don’t actually go ahead with it once approved.
“It’s exhausting being that sick, and for some, they just want to be able to say, ‘Okay, it’s been a good life and I’ve had enough suffering.’”
Death doulas
Treza Gallogly is, among other things, an end-of-life doula – she helps people prepare for death, with everything from organising a will and an advanced-care plan to talking about death and helping to bring family together at a traumatic time. She has just been appointed president of End of Life Doulas of Aotearoa, a nationwide network of mostly female practitioners. Auckland-based Gallogly became a death doula after one of her best friends became terminally ill with cancer. The former nurse and TV producer supported her friend in her last months and was there when she died.
“It was a really sacred and moving experience. It was a deeply human experience. From there, I started to think, ‘Gosh, maybe palliative care is for me.’”
Gallogly thinks we’ve lost our connection with death and the dying. A century ago, babies were born at home and we looked after the dying at home, too: children grew up with a broader understanding of life’s beginnings and endings. She points to World War I as the time when hospitals became more prevalent in end-of-life care and, for Pākehā families at least, funeral directors began taking bodies away.
“We don’t talk about death any more and we don’t bring our children up understanding it,’’ she says. “Death is the one thing that is going to happen to all of us. But it’s madness that we don’t prepare for it.’’
Instead, the dying are often overwhelmed with stress and anxiety, especially when “everyone is trying to pretend that death isn’t going to happen”.
Last year, Gallogly helped a woman with motor neurone disease who chose an assisted death. She was in her early 70s and found it difficult to choose a death date. Her three adult children returned from overseas. The day before her death day, they had a party in her room and shared happy memories. On the day of her death, her family dressed her and the doctor came.
“She’d had all the conversations she wanted to, says Gallogly. “She had done all the things that she wanted to in life and she was absolutely ready to go, and it was a very serene and calm time. It was beautiful, but also heartbreaking for the family.’’
Assisted dying is polarising. But we shouldn’t judge those who choose it, she says. “For anyone who’s gone to the point in their lives where they’ve asked for assisted dying, their life is pretty tough. I don’t believe as humans we have the right to make any judgment on anyone else’s call on this topic.’’
Controversy in canada
Canada has one of the highest rates of euthanasia in the world, making up 4.1% of deaths, compared with about 1% here. But its laws are controversial. From 2027, mental illness will be a condition that could qualify sufferers for a medically assisted death. Critics have also called for more funding for palliative care so patients don’t feel the need to request premature deaths.
One Canadian survey found that more than a third of applicants chose an assisted death because they felt they were a burden on family, friends or caregivers.
New Zealand’s euthanasia lobbyists prefer Canada’s looser rules but Naylor – and even Seymour – think they go too far.
Naylor doesn’t want the November review to focus on the “very small number of people making complaints that they can’t get an assisted death’'. But he agrees the gag clause – where a doctor can’t tell a terminally ill patient about voluntary euthanasia – needs a review, and it’s also very difficult to specify how much time someone has left.
The criteria for an assisted death need to remain very tight.
“We don’t want to go down the road of Canada, where their legislation was at risk of getting out of control and being made available to people who have disabilities or mental health problems, people who are homeless,” he says. “We don’t want it to become the norm as something that we do.’’
On the Kāpiti Coast, Ann David is a retired HR consultant who watched her mother die of terminal sedation in 2005 – a legal practice where food and fluid are withdrawn while the patient is kept deeply sedated. Her mother died after nine days, convincing her daughter that “there must be a better way’'.
Now president of the End-of-Life Choice Society of NZ, David believes our assisted dying laws should go much further. She believes that while a doctor should have the right not to provide an assisted death, institutions such as hospices and aged-care facilities should not ban it on their premises.
“It is a cruelty to withhold a peaceful death from suffering people. For most, just knowing they have the option to control their suffering is the best palliative of all, even if they never use it.”
Should New Zealanders be able to specify if they want an assisted death in an advanced-care plan or directive?
While the End-of-Life Choice Society is supportive, Seymour thinks this could be dangerous territory. He says a doctor is currently not the decision-maker but the gatekeeper (under current law, two doctors need to agree a person will die within six months). “Once you introduce another person as the decision-maker, more ethically it’s a very different debate.’’
Funeral homes are stepping up for those who choose euthanasia, in some cases allowing an assisted death on their premises. Funeral Directors Association CEO Gillian Boyes says the decision can be hard and she would like two changes: counselling and support for whānau who don’t support a loved one’s wishes, and a change from “assisted death’' appearing on the death certificate, which can upset relatives.
A tapu subject
Judy Larkin is the typical Kiwi who chooses assisted death: Pākehā, over 65 and suffering from terminal cancer. She wants to die at home, like four out of five of those who choose an assisted death. Māori are less likely to opt for voluntary euthanasia ‒ last year, only 4% of those who applied for an assisted death were Māori, even though 12.6% of those who died last year were Māori.
Why is assisted dying not as common for Māori? Tess Moeke-Maxwell is an expert in Māori end-of-life and palliative care. A senior research fellow in nursing at the University of Auckland, she and her team have been awarded a $1.2 million Health Research Council grant to investigate this topic over three years.
Moeke-Maxwell says whānau who are given a life-limiting diagnosis expect their health professional to talk to them about it, so they have to be proactive to get information. “That’s a barrier. A lot of communities don’t know what you’re talking about when you talk about assisted dying.’’
Her three-year project will create a website, graphic novels based on stories, and bring in cultural and spiritual aspects to help whānau make informed decisions. She has done 40 interviews so far with people with a terminal illness and bereaved whānau nationwide. “This is a very new and tapu subject,’’ she says.
Moeke-Maxwell also sits on Te Whatu Ora’s Māori advanced-care planning group. She encourages advanced-care plans but says, “Not everyone wants to do them. Asking people to engage with the concept of death and dying is an uncomfortable space for some.’’ Although Māori celebrate the dead with tangihanga, they are like Westerners ‒ also uncomfortable talking about death and the dying, she says.
But facing her own death is the reality for Emily, who worries about how her children will deal with her absence when cancer kills her.
Heather points to two birds illustrated on a wall at the hospice and thinks she will be returning to be with her deceased parents after she dies.
Judy hopes she will know when the time is right to get a doctor to end her life peacefully, so she can die with minimal pain and suffering, like her cat, Sam.